888-533-4443 Info@FamiliesforHoPE.org 1219 N. Wittfield Street, Indianapolis, IN 46229

People First!

Written by Carly Lowden

While you are reading HoPE, you may notice I say things like, “The child with HPE” or “The adult with HPE.” This may sound kind of wordy and repetitive, but there is a reason for it! You won’t hear me say, “The HPE girl” or “The HPE teenager.” Here’s why…

Have you ever heard someone say, “He’s an Autistic kid” or “You know, the Down Syndrome girl.” Or in the HPE community, you may hear, “The little HPE boy.” You may not realize it, but this is offensive to some people with special needs and their families. Some of you may be thinking, wait a minute- I have a child with HPE/special needs, and I don’t find this offensive. I didn’t even know there was anything wrong with it! Please, let me explain…

In the world of special needs, there is a phrase called, ‘People-first language.’ I was first introduced to this term, while pursuing my Bachelor’s Degree in Special Education. People-first language is exactly what the phrase says… putting people first! In this case, it’s putting the person with special needs first, with their disability second. When you say, “The Autistic kid” or “The HPE girl” it’s almost like you are dehumanizing that person, or defining them by their disability. This made sense to me as a teacher of children with special needs, and it makes perfect sense to me now, as a mother of a child with special needs!

From a personal perspective, when I introduce my daughter to someone new, I want them to see Abby. Not HPE Abby! Abby is a beautiful girl, just like all of the other children with or without HPE/special needs. This is how I want the world to see her! I don’t want the world to look at her and see her HPE. Yes, HPE is a part of Abby and that’s why we are all here, but she is a person, before her HPE!

So, there you have it… the explanation as to why I may come across as wordy when speaking of our kiddo’s with HPE, but there’s a good reason behind it! Please, keep this in consideration as you speak of people with disabilities. 🙂

In the works…

Thanks for stopping by HoPE!  Don’t forget to scroll down the page, to read HoPE’s first entries! Here’s a sneak peek at what you can expect to see on HoPE, in the near future…

~Child of HoPE: We will be regularly featuring a child/adult with HPE! The purpose of this entry is to give more insight into the life of a child/adult living with HPE. Of course, you can go to HoPE’s Blogroll anytime, and learn more about any of the kiddo’s with HPE, by clicking on the link to their webpage/blog!

~ Getting into the groove: HoPE will be featuring a new series about music! Music often helps us get through different phases in our lives. We want to know what kind of music HPE families listen to, as they experience different moods. We want to help create a playlist for different moods/themes! We are seeking songs for encouragement; songs about motherhood; songs to make you feel happy; songs when you feel reflective; songs to help you cry; songs about determination.

~ HoPE around the World: There are a number of HPE families living in the United States, but there are also several HPE families living around the world. We plan on featuring these children and their countries!

~Perspectives: HPE families experience different phases. These phases include prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE. We think it would be interesting to hear different perspectives from all of these phases, and share them with our readers. We are accepting admissions now!

~Guest Authors: There are several blogs and webpages written and maintained by HPE families. (You can view these under the HoPE Blogroll.) With so many writers and bloggers in the HPE community, we want to invite those individuals to submit entries to HoPE, as this blog is for everyone! If you are interested in submitting an entry to HoPE, let us know!

~HPE Gear: It’s that time of the year again…Fall! In the HPE community, that means it’s fundraising time for FFH (Families for HoPE!) This year’s fundraising efforts are in the works, and we will soon be bringing you info on how to purchase your HPE gear!!

I need to warn you that it’s contagious…

As a parent of a child with complex medical needs and the potential for recurring hospitalizations, the very last phrase we want to hear is, “it’s contagious”; however, when it comes to laughter, being contagious is welcomed and encouraged.  Laughter is good medicine for a stressed-out, sleep deprived parent.

When we laugh, we trigger the release of endorphins and serotonin—the feel good hormones that create the feelings of euphoria, love and happiness.  As well as triggering endorphins, laughter also suppresses stress-related hormones in the brain, relaxes muscles, enhances respiration and circulation, and even oxygenates our blood, which allows us to think more clearly.

Throughout my son Sammy’s life, we laughed a lot.  We said silly things, made silly faces, and sang silly songs.  Sammy experienced seizures, and it seems ironic to me that even some of Sammy’s seizures presented as smiles and chuckles.  His signature photo that puts a smile on everyone’s face…that big smile was a seizure.

Six weeks after Sammy passed away, I was invited to a girls’ weekend.  The girls were three other women who had also experienced the death of a child—two were HPE moms and one was the mother of a young man who passed after a life-long battle with cystic fibrosis.  One of the ladies rented a log cabin for the weekend, and we made plans to meet there on a Friday evening.

We all brought scrapbooks and photos of our kids, and for the first few hours, we looked at pictures and shared stories about our kids’ lives and our experiences.  There were a few tears at first, but after a while, there was laughter…lots and lots of laughter.  The kind of laughter that is contagious; the kind that makes your abdominal muscles get a good workout; the kind that makes you run to the bathroom for fear that you might wet your pants.

The few days I spent secluded in a log cabin with those grieving moms confirmed to me that there was still HoPE even in the midst of my mourning.  I had been infected with contagious laughter, and it was good medicine to my soul.

Do you need some infectious and contagious laughter today?

2006 HPE Family Conference

Flackback Friday – April 2006

HPE Family Weekend and Conference

Indianapolis, Indiana, USA
April 21-23, 2006

Co-sponsored by Families for HoPE, Inc.
the Carter Centers at Kennedy Krieger Institute

The Highlights

The HPE Family Weekend & Conference, co-sponsored by Families for HoPE and the Carter Center at Kennedy Krieger Institute, was truly a weekend to remember! Friendships were created, lives were celebrated, and HoPE was abundant. Here’s a special report on a few of the highlights from the event.

Up, up and away . . .

On Friday evening, April 21, travelers on West 86th Street in Indianapolis were distracted by 130 helium balloons ascending toward the heavens, from the courtyard of the Marten House Hotel and Conference Center, in honor and memory of infants and children who had passed away due to complications of HPE. Their lives were remembered as family members and friends released a balloon tagged with their identifying information. To date, we know that Anysia’s balloon was found in Lima, Ohio and the string and tag of Harrison’s balloon were found near a pond outside of Buffalo, New York, where mysteriously, a frog was also discovered hopping about!

Welcome to Indy

For many of the 26 families in attendance, this was their first visit to Indianapolis, so it needed to be extra special. Inspired by children’s book Twelve More Little Race Cars by Scott and Judy Pruett, a racing theme was chosen for the kick-off dinner. The highlight of the evening was each family’s moment in the “HoPE Raceway Winner’s Circle”. Each of the children diagnosed with HPE is a winner, and at HoPE Raceway all winners were presented with a trophy declaring him/her a “Champion of HoPE” as they sat behind the wheel of a custom-designed race car (wheelchair accessible, of course) bearing the names and logos of all of the corporate sponsors of the event.

What would a victory speech be without thanking those who made the victory so sweet? Special thanks to Indianapolis Motor Speedway Corporation, Tony Stewart Foundation, Women’s Auxiliary of Motorsports, Hendrick Motorsports, Party Time Rental, and Build-A-Bear Workshop. Personal thanks to Joey Arnold, Myrian and Keith Wiggins, Judy and Scott Pruett, Cheryl Riley and especially to Debbie and Bruce Timmerman for realizing the vision and making the racecar a reality.

Gentlemen, start your engines!

A group of dads and grand-dads descended on the Indianapolis Motor Speedway for “Rookie Orientation” on Saturday morning. The excited wanna-be racers were shuttled to the track by driver Ron Clark aboard a bus provided by Traders Point Christian Church. Upon arrival, the rookies’ excitement reached a fever pitch as they were greeted by the sound of roaring engines from the Richard Petty Drivers’ Experience session in progress. With the adrenalin still flowing, the racers visited the IMS Hall of Fame Museum where they learned about the history of “The Greatest Spectacle in Racing”. Each rookie could only imagine how the legendary Ray Harroun, Dan Weldon, Jeff Gordon and Tony Stewart felt as they climed the fence, took the checkered flag, kissed the yard of bricks and took the ceremonial swig of milk! After all that stimulation, the racers made a pit stop at the museum gift shop to pick up a few souvenirs. Track officials confirmed that a good time was had by all!

Meanwhile, back at the hotel . . .

The moms and grandmothers spent the morning being creative with a scrapbooking activity led by volunteer Kayce Auman. The ladies also participated in a beaded bracelet project designed in “assembly line style” so that every bracelet created would have beads placed on it by the hands of each person in the room. These bracelets would serve as a symbol of HoPE and a constant reminder that “We’re all in this journey together!” Special thanks to Danielle Tooley for donating the beads and wire for this project.

While the moms were occupied with their projects, the children were having fun too. The girls ages 6 and up, participated in a flip-flop decorating activity led by volunteer Anne Lennon of Sally Huss Gallery. All of the girls were quite fashionable at the pool with their newly-decorated flip-flops! The boys ages 6 and up were a busy group as they participated in a scavenger hunt supervised by volunteers Phil Parelius and Rob, Jan, and Nick Meyers.

Other activities also included singing, dancing, playtime, story time and a craft project. In the afternoon, there was a visit from several service dogs affiliated with the nonprofit organization, Canine Companions; also, the siblings participated in SibShops, workshops intended to celebrate the siblings of disabled children, conducted by a group from Easter Seals Crossroads.

Taking a parade lap on a “Holiday” weekend!

The theme selected for Saturday night’s events was appropriately titled “Merry Happy Holidays”. Many of the families and children with HPE have celebrated at least one holiday within the confines of a hospital room. A few of them can no longer count their in-hospital holidays on just one hand. In appreciation of all holidays—past, present and future—each family celebrated the special days of every season all in one night, and no one had a passing thought of the hospital!

Each child presented in costume and participated in a colorful parade winding from their rooms to the hotel ballroom where the evening’s festivities commenced. It was quite a sight to behold as superheroes, princesses, firemen, clowns, and various other characters marched their way into the hearts of the observers along the parade route!

Inside the ballroom, the children collected treats and favors in bags they had decorated earlier, from each table pertaining to the various holidays.

After dinner, thanks to the in-kind donations of many individuals and corporations, no one left the ballroom empty-handed as the door prizes were generous and abundant. Of particular note were in-kind donations from Rifton Equipment (bath seat), AdaptiveMall.com (feeder seat), and Enabling Devices (adapted toys and switches). Several children were able to immediately benefit from the donation of these items which can often be very expensive and difficult to obtain through health insurance plans.

Parting is such sweet sorrow . . .

After a night of sleep, all of the families gathered one final time for breakfast on Sunday morning. It was a time for exchanging contact information, taking photos, and sharing hugs and handshakes to reinforce the new friendships made over the course of the weekend. Even though some felt weary on an early Sunday morning following a very busy weekend, there was a spirit and enthusiasm beginning to fill the air. Not only had the families connected with other families so similar to their own, they were discovering a renewed sense of HoPE.